Does anyone else have MGUS?

@wesleym Nicely thought-out reply. I agree with you 100%. I was just diagnosed with SMM. "Watchful waiting" is a treatment. So is living a healthy life. Good luck to everyone!

Chris - Sorry, I don't agree with much of what you write. First of all, there is a TON of reliable, publicly-available information on MGUS - risk factors, severity in terms of likelihood of progression, appropriate monitoring and much more. For just one source, the International Myeloma Foundation - for MGUS specifically, https://www.myeloma.org/search - is a great place to start.

Second, MGUS absolutely has a standard of care. "With certain lab values, do not treat but monitor as appropriate" IS a standard of care. You don't treat every condition for which the potential exists, because treatments themselves have risks which must be balanced against the risks that the condition presents. Perhaps a more familiar example (at least for men) is prostate cancer. Approximately 80% of men age 80 and older have prostate cancer (source: https://www.ncbi.nlm.nih.gov/books/NBK470550/), but very few of them will actually be treated if diagnosed at that age. Why? Because they are far more likely to die from something other than prostate cancer. As I'm sure you've read, here if not elsewhere, the average MGUS patient is unlikely to ever progress to MM. And first-line MM treatment, which is far more easily tolerated than it was even 10-15 years ago, nonetheless has its own risks. First do no harm.

Finally, there are ongoing studies relative to slowing progression, though those studies are directed to SMM patients (rather than MGUS) because of their significantly greater risk. A couple are promising, but AFAIK none have shown results of ultimate benefit (meaning not only slowing progression but extending survival).

I am 74, with high-risk MGUS that seems to have very recently morphed into SMM (it's a continuum) depending on what criteria one uses. When I was first diagnosed (about two years ago), I felt similarly to the way you feel - there's gotta be something to do about this. And there is - keep your weight down, eat well, exercise, get enough sleep. In other words, live a healthy life.

@sunsetchris The rate that MGUS may advance into smoldering multiple myeloma, and then into multiple myeloma, is pretty slow, for the vast majority of people. There are many forms of myeloma, that is why it is called "multiple". And another reason why there is no set protocol to waylay the progression, as it is many-pronged. Does that make sense? It is like finding a needle in a haystack.

Glad to hear your blood values are normal.
Ginger

@gingerw I have MGUS since I had a broken hip and replacement last year. M spike showed one time. Oncologist happy that blood work is normal. I am elderly at 84 but still competent. I have a doctorate in nursing. Yet I am very unsatisfied faith advice from MDs . All other pre cancer conditions do something or do some meds etc to prevent progression. Not MGUS.! MM is. Deadly cancer. Why no intervention at MGUS. Also thoughts on Tumeric.. Thanks Chris Malloy

Yes I have MGUS and obsess about it. Information is very limited on severity and what it means. If u had a skin leision your dermatologist would biopsy it and determine whether it was malignant or progressing. MGUS has no standard of care and u just have to wait for any treatment until in turns to MM. Every other cancer has preventative steps I.E skin cancer or breast. But here we have a definite precursor to a deadly cancer and yet the medical community just says wait until it turns. Is that the most ridiculous thing you have ever heard.? Anyone feel the same?

@rachelziman72, I echo @theadosi's question and add my welcome.

Rachel, have you also been diagnosed with MGUS? How are you doing?

@spenjen hey there! How old were you when you were diagnosed?

Its pretty common. Can become more serious or not. Monitoring is the recommended treatment for most.

I was diagnosed in 2016. I am positive for the genetic mutation for WM (myd88) and have plasma cells and lymphoplasma cells in my bone marrow, but was 5% at last check so still mgus.

I was diagnosed with MGUS probably 8 or more years ago.The thing to do is get your bloodwork done every six- twelve months. If your numbers are worse, see your hematologist/ oncologist. If the numbers remain pretty much the same or even better, just forget to worry and enjoy your life! Good luck.